Blood counts are high enough to fight infection. Looks as if we will not have to be admitted but will go to a hotel instead. Meeting with doctors first thing in the morning to get game plan together. From this mother's perspective, she is exhausted, hasn't eaten in 48 hours, won't drink and has been on some big league antibiotics for over a month. Her little body is just worn down. A peaceful, easy weekend at home may do her body good. I PRAY the doctors will agree....
10:00pm. First late night run to St. Jude. Fever 102.
This is the baby that is well but can't come home tonight.
Difficult times come, right? We all have them, sometimes we cause them and sometimes they are merely circumstances the Lord, in His providence and wisdom, has ordained that we should endure and by which we might bless others. When those times come, the Christ-follower, looks to Him and closes ranks with the Lord. Soldiers in a dangerous place take strategic positions where each can see the other and all can see the leader without the slightest possibility of mistaking a command.
When doubts are attacking you, prayer is the source of power that will draw you closer to the Savior. When fears begin creeping into your perimeter, then you can shed the light of God's peace and unconditional love as you ask God to fill you with both to shine out in His name. Since God is filled with goodness, then THAT is exactly what He will fill you with when the need arises.
No matter what the difficulty, no matter how stressful the trial, no matter how painful the heartache you may be experiencing, take it to the Lord just now and receive, in exchange, enough peace to get you through the moment, the hour, the day. When the resource runs low, go back for more, there will always be plenty. "Ask and you will receive, seek and you will find. Knock and it will be opened to you (Matt. 7:7).
"Lead a life worthy of your calling, for you have been called by God. Be humble and gentle. Be patient with each other's faults because of your love. Always keep yourselves united with the Holy Spirit and bind yourselves together with peace." Ephesians 4:1-3 NLT
What I took from this was asking God to get you through each day, moment by moment. I think this might be my new approach to my days. Asking God to just get us through each appointment, therapy, radiation and eventually Chemo--one day at a time.
After a day off of hospital duty, Erik was back with me today for weekly doctor appointments. We met with Dr. K, our Radiologist, and I really wanted him to be there with me. It was a very sobering visit and I was so glad I did not have to do it alone. He showed us Lucy's MRIs. It was the first time we really got to see what we are dealing with. We knew there were tumors left, but seeing really is believing. I think somewhere deep within I wanted to convince myself they weren't really there. But they are and her fight has just begun. Day 4 of RT went well. She is so good with the doctors. Today she just sat up on the table and watched Scooby Doo while they did her Anesthesiology workup and then handed over her DS without any fuss when it was time to go to sleep. She gave Erik and I a kiss and then she was out. It is getting easier to stomach this whole process but I still leave with knots each time.
So, we left our appointment with Dr. K feeling as if we had been kicked in the gut and I was crying (which is fairly normal for me these days). We headed over to Dr. W's, our oncologist, for our 2-3 times a week check up. She took Lucy off of two of her medicines--high fives all around. Then she told us about the Magic Pump. Basically we will not have to wake up all night to give her meds. Another round of high-fives. Literally. We had the nurses and Dr. W laughing. Listen, it's the little things in life right now that bring so much pleasure. The pump is only good during the week, so this weekend we will be back on night duty, but we will take the three night break and be very grateful. And just like that we were back on the happy track again. Seriously. These emotional rollercoasters are hard on a Mommy.
Once we got home we played in the floor with Jack and spent time with Ella. Lucy played with Hyatt while Amanda and I went to visitation for my friend Sarah's dad. Tonight felt so...normal. It was great. Erik's parents ate with us and then left for their apartment.
Something really special happened at our house tonight. It deserves its own post. I'll write about it tomorrow morning.
Right now I am going to bed. I've got baby duty all alone tonight. Grandpa has been a God-send, but grandparents aren't great at listening to babies cry. I've got some pretty nasty habits to undo! Love you Grandpa!!!
A sister in Christ, that is. Ella asked God to come into her heart tonight and Erik and I were so proud and THANKFUL to be home to talk with her and walk her through a sinners prayer. God has been tugging on her heart for some time now, but I am thankful she waited to do this with us. What a blessing. Just when we needed something super positive in our life, God answered in a big way! Welcome to the family of Christ my sweet, sweet Ella. Mommy is so proud that you will forever live in heaven with Jesus and it gives me such joy to know we will always be together.
I have a plaque hanging in my kitchen that reads "I could have no great joy than to hear that my children are walking in truth." I have always prayed for my children's salvation but have spent more time praying for Ella lately. I am so glad to see that prayer come to fruition.
It might be a little tricky getting to church anytime soon, but I can't wait to see Ella go before our church for her public profession of faith and then witness her baptism. GOD IS GOOD!
Lucy did fine today. Rather well, to be exact. She had a long, long day with appointments starting at 10:00 and not letting up until 3:30. I actually cancelled the last two of the day because she was worn out. And so was mommy. Mine was more of an emotionally challenging day. I'm still really struggling to accept Lucy's cancer and the upheaval it has caused in our family. Today was an I-just-want-to-punch-the-wall kinda day. I held it together pretty well until I got home and then I cried most of the night. I'm mad, angry, frustrated,
Today we found out that we have at least one more week on all of these antibiotics. That means getting up 3-4 times a night for medicine changes. DON'T GET ME WRONG!!!! I would gladly do this for months if it would keep her out of the hospital, but we had our hopes up that we would be stopping them tomorrow. Oh well, just a small price to pay to get my baby well. And speaking of that....did I mention cancer sucks? Well it does. It does for Lucy and it does for the hundreds of other children being treated right now at St. Jude. It sucks for the millions who have been treated for it, are struggling with or have died from it. I just don't get it. Children?! It's all just too much for anyone to have to go through. Really, it is.
Everyone keeps telling me that St. Jude is a happy place. That the kids love being there. I'm still waiting on that to start making sense. Right now I walk down the hall and see sick children, sad parents and breathe the heavy aroma of burdens to heavy to bear lurking in the air. Babies too young to imagine with cancer. Teenagers missing their high school years because of cancer. Kids like Lucy who look at their parents and say "Mommy, I miss my friends." Yeah, try dealing with that one.
There are so many mothers who make the St. Jude trip alone and desperately need friends. I'm just struggling to hold it together on a moment to moment basis. Much less helping someone else cope. And this is not my usual personality either. Even at Le Bonheur I found solace in ministering to other peoples needs. Right now, I'm needing some major ministering myself. I have met three sweet ladies, Hope, Tessie and Christina, and then another one today named Mary. They are all very kind and seem to respect my need for some distance. I met Hope, Tessie and Christina at Le Bonheur and we were able to form a friendship. Not a friendship based on desirable terms, but a friendship none the less. I am able to text Hope and Christina when I need to vent or have questions. Unfortunately, this is neither of their children's first time at St. Jude. Both have recurring tumors and are currently undergoing RT and then Chemo. I'm telling you. Cancer sucks!
It is really hard not to get bogged down in the stories you hear. Women like to talk. We talk to vent our frustrations and find comfort in conversation. I'm really having to distance myself from too many people who want to talk. The friends I've met seem to get that. Others don't. Today I met a mother who's 2 year old has been through the ringer and quite honestly has basically no chance of living. I can't help but be burdened for this mother, but the reality is that I have too much of my own burden to carry. I am praying that God would open my heart to others and take away some of the anxiety I feel on a daily basis. I know I am not being the Christian He calls me to be, but right now I just don't have it in me. My prayers are selfishly going up for my child right now. Sorry. That just the way it is. I do say sweet breath prayers everytime I can for these mothers I have met, but I would be lying if I said I have gone to His throne on a daily basis for them. I'm working on it. I'm just not there yet.
I wake up daily and pray that my eyes would remain focused on God and that my mind and heart would be focused on Lucy. She deserves and demands everything I have right now. She is going to beat this thing, I just hope we have something left in our tanks when she is done.
3rd RT completed today. They started on her spine. We have about 2-3 weeks until her hair starts to fall out. I've begun talking with Ella about this, but honestly have no clue what to tell Lucy. I'd love suggestions for anyone who's been in this position. My gut feeling is that she is not going to give a flip about it. She probably won't want to wear a hat or anything. I have a few that people have sent just in case! I am also going to try to get her to wear those stretchy headbands with bows. She is so used to wearing hairbows everyday anyway I am hoping this might seem normal for her. Either way, she is going to be the most beautiful bald-headed 5 year old anyone has ever seen. Cancer might get her hair but it won't get the sparkle from her gorgeous blue eyes!
Dear Lord, thank you for the sunshine today. Thank you for allowing Lucy to do well with the doctors and nurses. Thank you for Ella and Jack. Thank you for my dearest friends and 2 sets of grandparents who love us dearly. Thank you for loving me despite my bad attitude and thank you, in advance, for healing my daughter.
2 prayer requests:
1. My dear friend Sarah's father passed away this morning. I know this has to be so hard on them and I just wish I knew the words to say. I love you, Sarah and family.
2. My sweet grandfather underwent some major bladder surgery associated with cancer the day before Lucy was diagnosed. He acquired MRSA while in the hospital and is having some set backs. He is scheduled to go to his Oncologist tomorrow to determine how his cancer will be treated. But just like Lucy, they have got to get him well and keep him well before they will treat it. I have not seen my grandparents since Lucy was admitted into the hospital on Feb. 23. The night before I went to visit them right afer surgery and saw them for only 10 minutes in the ICU. I miss them terribly, but they have both been too sick to be arond Lucy (my grandmother caught MRSA from my grandfather.) Please pray that his cancer will be easily treated and that God will continue to bless his life.
I'm happy to report that we arrived home this afternoon around 4:00. And just like that we are back to a "regular" night at our home. Getting dinner ready, watching TV, playing with Jack, changing diapers and giving baths. Throw in some IV antibiotics, fever checks every hour and sorting through boxes of sterile medical equipment and you've got a new normal night at the Krull house. It's a lot of work and sort of crazy around here but I wouldn't trade it for anything. We've needed this night for a long, long, long time.
Thank you all for the month of ceaseless prayers, letters, emails and Facebook messages. I don't know how we would have survived during this initial hell without all of you--friends and strangers alike. I've been reading mail from all over the country--not to mention that gifts you have all sent for Lucy--and I'm just blown away. Seriously. There are a lot of really great people in this world. Our family has been blessed by each of you.
Now comes the specific prayer requests. I've decided I'm not backing down at all. I'm asking for these things EVERY single day. My God is great enough to do them all. I believe it with all my heart
1. That God would miraculously heal Lucy from her cancer.
2. That there would be no long term damage from the radiation.
3. That Lucy would stay out of the hospital until it is time for her Chemo.
4. That after treatment she would stay in remission for the rest of her LONG life.
Come on God, show out in a BIG way. I still believe in miracles.
I'll post more tomorrow when I'm not so tired. Right now I have to go flush and clamp a line so we can sleep for about 2 hours before Lucy's next IV antibitoic is due.
Maddie has brought so much joy to all of our lives. She is so funny. She looks just like her Daddy and acts just like her Mommy. She is so dainty; always holding her hand out like a princess. That crazy strawberry hair makes me laugh and her funny expressions bring a smile to my face every time I see her. Her sweet peaches and cream skin is the most kissable ever and I just love her like she is mine.
Like most new moms, my sister has been planning Maddie's first birthday for months. She just wanted everything to be perfect. It wasn't ever going to be a huge party, just family and close friends. I had been planning on making her the perfect birthday gift (I'm still going to smock that dress before its all said and done) and I couldn't wait to see her dig into her moo-cow smash cake. Unfortunately plans changed for us and clearly we weren't able to make it. Ella did attend with my parents, but the rest of us were here stuck in the hospital.
We did get to celebrate with her on Friday, though. Just a little cupcake sharing between two cousins. The pictures aren't the best and I don't have any of my super cute Maddie pictures here at the hosptial to post, but I wanted to share just a few of the ones I have.
We love you sweet Maddie-Moo!!!
If Lucy is Buzz, then Hyatt is Woody. A pair indeed!
I thank God for Hyatt and his love for Lucy. It absolutely does not phase him that Lucy has messed up hair, or that she is stuck in this hospital room or that her appearance has changed a little due to steroids. I really doubt that he will hardly even check up when she looses her hair. They have been best friends since she was born and they are a perfect pair. They fight like brother and sister then love just the same way. Even on her bad days at Le Bonheur she would ask for Hyatt and would perk up as much as possible once he came to visit. It does her soul good and mine, too. I love to see the sparkle return to her eyes when he is hear playing Wii with her, dancing to make her laugh and saying silly gibberish things that only she thinks are hilarious. He's the best medicine for her by far.
We love you sweet, precious Hyatt. A dear friend until the end!
I feel as if I have so much to say. So many updates. First of all, at the time of writing Lucy is 40 hours fever free. She had to stay free for 48 hours to be able to go home. Let me just go on the record to say that if we don't get discharged tomorrow morning there will be heck to pay!! I am ready to get my baby home and have our family back together again. Being apart from Ella and Jack is starting to take its toll on all of us. Ella left here tonight sobbing because she just wants to be with Erik and me. I, in turn, spent a good ten minutes crying as well. It's amazing how my emotions still swing from high to low in a split second. One minute we are praising God for the wonderful day Lucy has had and then in a moments change I am questioning how a God of love and mercy could allow an innocent child to suffer. Not only Lucy, but Ella and Jack too. Theirs is more of an emotional turmoil while sweet Lucy will literally be turned inside out with suffering at times.
I have to force myself not to dwell on those questions. Its a dangerous path to head down to be honest. A path both Erik and I have been on too many times. You can begin to think some pretty dark thoughts. One of my more "not-so-inspiring" days was this past Thursday. It was Lucy's first day of radiation and Erik and I felt as if we had just fed our baby to the lions. Half of Japan is running away from radiation and here we are making a purposeful decision to expose Lucy to it for 33 days. But what do you do? She can't get well without it so we don't really have an option. Ugh! It sucks. No parent should ever have to make this decision. But right now we are praying fervently that God will hedge Lucy with a mighty shield of prection that will limit the harmful side effects of the radiation. We are pleading with God to keep her healthy and safe.
Lucy has completed 2 radiation therapies. 31 more to go! The countdown to our 4 week break has begun. Speaking of our break, I have already started to pray that Lucy will be healthy enough for us to do something fun as a family. Maybe a trip to the Smoky Mountains? Lucy has also been qualified for a Make a Wish trip, so that may happen then depending on what she wants to do. It's kind of funny talking to her about it, though. A 5-year old sure has no concept of the world. I asked her where, in all the world, she wanted to go. Know what she said? "The lake house." God love her! The lake and the swimming pool are totally off limits this summer. I'm not sure how we are going to do that with Ella, but due to Lucy having the central line she can't risk the infection. We will chalk this summer up as a loss, but can't wait until the next one! We should have lots of celebrate.
Physical Therapy is still going well. Lucy fights it, but has learned that its not an option. It amazing how much stronger she has gotten. They have provided us with a small walker for her to use for stabilization as we practice walking and on Monday she will be fitted for a temporary brace. The fear is that as she is regaining the strength in her legs she might hyper extended and pull a muscle or damage a tendon/ligament. She still has some hyperflexion in her right knee that will improve with time. I'm still convinced that getting her home will be the best PT around. Keeping up with Ella, Jack and her friends is going to provide all the stimulation she needs to get well.
"The LORD is my rock, my fortress and my deliverer; my God is my rock, in whom I take refuge. He is my shield and the horn of my salvation, my stronghold. I call to the LORD, who is worthy of praise, and I am saved from my enemies. The cords of death entangled me; the torrents of destruction overwhelmed me. The cords of the grave coiled around me; the snares of death confronted me. In my distress I called to the LORD; I cried to my God for help. From his temple he heard my voice; my cry came before him, into his ears."
I have so much to write but it is just impossible on my phone :)
Today was a day of emotional ups and downs. We were no where near the dark depths we have been before, but definitely felt overwhelmed and frustrated to a point of discontent and lots of tears. It is so hard watching Lucy struggle to get well. I keep saying over and over, “she hasn’t even started fighting the cancer.” Well, all that changes tomorrow as Lucy will (baring any unforeseen problems) start radiation. Her first treatment is scheduled for 12:45. She will be sedated, but only with enough Propofol to help her rest easily. Each radiation therapy (RT) only lasts roughly 20 minutes. She then goes to recovery to wake up and we go about our business.
Lucy continued to run a fever today off and on, but it seems to be well maintained with Tylenol. When you have cancer, the general rule is to never give a child Tylenol when they are hurting or running a fever. It can mask infection and that can lead to a big, ugly mess. But since we have already established that she does indeed have an infection somewhere we have a little more flexibility in controlling the fever. They are watching a few cultures (blood, urine analysis and CSF through a shunt tap today) to see if anything turns up. Nothing specific has reared its ugly head yet, so we are PRAYING she just has/had a virus. Please, please pray that with us. We can not go home until they either know exactly what is going on or her fever dissipates on its own for more than 24 hours. We desperately want to get her back home.
We have been trying to get a PT consult worked into the schedule for some time now. Well, today it finally happened.
I was so glad, as this has been weighing heavily on my heart. She needs to be walking again and right now she just can’t do it without a lot of help. I was
pleased thrilled ecstatic after the Physical Therapist said that everything looked to be working properly, we just need to build up Lucy’s core strength and leg muscles. We will also be working on balance issues over the coming weeks/months. It will be a long process, but I know she has the determination to put in the hard work it will take. So tomorrow we are going to try to see if she will walk with a walker. I just hope her pride does not get in the way.
We have a busy day tomorrow and I am exhausted. Lucy, on the other hand, slept more than 1/2 the day and is wired. Right now she is playing Wii with her Daddy.
I keep asking her if she is tired yet and its a no-go. I am just hoping that once she actually goes to bed tonight we will all get a restful night’s sleep. I wish more than anything I was in my bed, Ella and Lucy sleeping together and Jack curled up in his crib. Hopefully soon…..
8:00 Abdomen X-ray
8:30 Abdomen Ultrasound
9:30 OT Consult
10:00 PT Consult
10:30 Audiology Consult
11:00 Photography Visit
11:30 School- New Patient Consult
2:15 Neurosurgery clinic visit
A day in the life of a new St. Jude patient.
To finish up, I wanted to share a couple of positive things that came our way today:
1. Dr. B read our last MRI and it appears that the tumors in Lucy’s back have not grown or spread. We are very excited about this news, as we all just assumed they probably would have since we have been so delayed in getting started with her treatment. God is showing himself in a HUGE way here.
2. It also appears that her spinal cord is rebounding well from where it had pressure on it from the tumor. This would explain why Lucy is making progress with her walking.
3. PT believes Lucy will get all her walking functions back with some hard work and lots of time.
This being said……please don’t stop praying for Lucy. Erik and I live every moment with the dread of what Lucy is about to go through. Radiation brings some unwanted side effects that we are praying will be kept to a minimal level. Actually, we are praying that God would perform a miracle and she will not have any side effects at all. And then once that is all done, we have to watch our baby suffer through 4 months of Chemotherapy. So again, our family covets your prayers and we need them now more than ever. Thank you so much for allowing Lucy to be a part of your lives.
Once again, please understand if I don't respond to your message but I guarantee I am reading them and I am blessed by each and every one. God has laid my Lucy on so many hearts and your prayers are definitely being heard. There is no other way to explain and grace and peace Erik, Lucy and I feel on a daily basis. This nightmare of ours seems to have touched many hearts, but each of you has also touched ours. Thank you again.
We went straight to St. Jude for Erik and I to learn how to administer her IV antibiotics. We finally got home around 5:30pm. Things were going great...until. Until Lucy started running a fever. Being new to this whole cancer thing, I gave her Tylenol and did not call any doctors. Big mistake apparently. Lesson learned!
I don't think I got a moment's sleep watching her and checking her temp every 30 min. Seriously. I was a nervous wreck. We did not have to report back to St. Jude until 11:00 the next day, but I had planned on getting there early so that she could be assessed for the fever. While I was in the shower, Erik called me on my cell phone (from the other room) to tell me he had been very sick all night. Great! Another one down with the stomach virus. Even though he could hardly move, he had already called me mom to get her prepared to go to Memphis with me. (My mom had kept Jack for me that night. I know it was our first night home, but he had gotten his 6 month vaccination that day and was quite irritable. I hated to send him off, but in hindsight it was a great decision).
Even though she was sick, I think Lucy enjoyed her 12 hours at home. Just seeing her family and enjoying the sunshine was such a blessing.
Long story short, Lucy was admitted-much against her will I might add- yesterday for observation. She kept a 103.5 fever all night long and kept us on our toes. Her blood pressure dropped at one point and her heart raced in the 190's. I am happy to report that at the moment she is resting well, her fever is finally starting to break and she is comfortably asleep in her Daddy's arms. Erik is no longer in quarantine so he is curled up in the recliner holding his sweet baby girl.
My prayer this morning is that whatever is causing Lucy's fever will manifest itself boldly and the doctors will know exactly how to treat it. I don't feel defeated today, just frustrated. I know God will sustain us and this too shall pass.
"Come to me, all you who are weary and burdened, and I will give you rest.
by Russell Kelfer
Desperately, helplessly, longingly, I cried;
Quietly, patiently, lovingly, God replied.
I pled and I wept for a clue to my fate . . .
And the Master so gently said, "Wait."
"Wait? you say wait?" my indignant reply.
"Lord, I need answers, I need to know why!
Is your hand shortened? Or have you not heard?
By faith I have asked, and I'm claiming your Word.
"My future and all to which I relate
Hangs in the balance, and you tell me to wait?
I'm needing a 'yes', a go-ahead sign,
Or even a 'no' to which I can resign.
"You promised, dear Lord, that if we believe,
We need but to ask, and we shall receive.
And Lord I've been asking, and this is my cry:
I'm weary of asking! I need a reply."
Then quietly, softly, I learned of my fate,
As my Master replied again, "Wait."
So I slumped in my chair, defeated and taut,
And grumbled to God, "So, I'm waiting for what?"
He seemed then to kneel, and His eyes met with mine . . .
and He tenderly said, "I could give you a sign.
I could shake the heavens and darken the sun.
I could raise the dead and cause mountains to run.
"I could give all you seek and pleased you would be.
You'd have what you want, but you wouldn't know Me.
You'd not know the depth of my love for each saint.
You'd not know the power that I give to the faint.
"You'd not learn to see through clouds of despair;
You'd not learn to trust just by knowing I'm there.
You'd not know the joy of resting in Me
When darkness and silence are all you can see.
"You'd never experience the fullness of love
When the peace of My spirit descends like a dove.
You would know that I give, and I save, for a start,
But you'd not know the depth of the beat of My heart.
"The glow of my comfort late into the night,
The faith that I give when you walk without sight.
The depth that's beyond getting just what you ask
From an infinite God who makes what you have last.
"You'd never know, should your pain quickly flee,
What it means that My grace is sufficient for tee.
Yes, your dearest dreams overnight would come true,
But, oh, the loss, if you missed what I'm doing in you.
"So, be silent, my child, and in time you will see
That the greatest of gifts is to truly know me.
And though oft My answers seem terribly late
"You'd never know, should your pain quickly flee,
What it means that My grace is sufficient for thee.
Yes, your dearest dreams overnight would come true,
But, oh, the loss, if you missed what I'm doing in you.
1. Thanks for the sunshine. For the first time in 26 days Lucy actually asked to go outside. It was so nice. The first thing she said was "I'm not cold." We took two laps around the hospital and just enjoyed the sun shining down on us. We enjoyed looking at the trees that are blooming. This is truly my favorite time of year and I had no idea how much had blossomed in the past month.
2. Thankful for time with Jack today. Erik's Dad brought Jack down for a few hours. I sat in the floor and played with him for a couple of hours. We pushed him in the little car up and down the hallways of the 7th floor for what seemed like a million laps. I didn't care though. He was having a blast. I also got to hold him for a little while when he took a cat nap. As a mom to a newborn/infant you sometimes get caught up in the everyday routines of feeding, diaper changes and naps. Today I absolutely loved changing his diaper and holding him while he slept. It was pure bliss. We have also discovered that Jack is good therapy for Lucy. Her attitude seems to improve ten-fold when he gets here.